Rate and frequency of bullying victimization in school-age children with neurofibromatosis type 1 (NF1)

Children and adolescents with the genetic, tumor predisposition syndrome neurofibromatosis type I (NF1) have varying degrees of physical stigmata characteristic of the disease and experience high rates of social difficulties. The present study was the first to formally examine the rate (i.e., percentage of participants) and frequency of bullying victimization in a school-age sample of individuals with NF1. Bullying is defined as harmful behavior that is intentional, repeated, and involves a power imbalance between perpetrators and targets. Given that physical stigmata are characteristic of NF1 to varying degrees, it was hypothesized that bullying experiences would be common in school-age children with NF1. The present study also examined factors including age, gender, and health care provider ratings of severity of physical stigmata on self-reported rates of bullying victimization. Eighty-one school-age children with NF1 and a parent completed established bullying questionnaires. Results showed about 62% of the sample reported being bullied at least once in the last year, with 24.7% reporting being bullied daily. Boys reported significantly greater frequencies of bullying than did girls. Unique differences of gender and level of physical stigmata emerged, such that girls with low stigmata burden experienced significantly higher rates of bullying than girls with high stigmata burden. No differences in frequencies of bullying between low stigmata boys and high stigmata boys were found. The present study suggests that rates of bullying in NF1 are very high, which may be undervalued among adults and medical professionals, given the lack of research on bullying toward youth with NF1. School psychologists are uniquely positioned to implement programs and interventions to address the high rate of bullying toward the school-age NF1 population.